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In her own words: living with multiple sclerosis
Patricia is a 28-year-old financial proposal writer from New York City. She has been living with multiple sclerosis (MS) for six years.
What was your first sign that something was wrong? What symptoms did you experience?
The first sign that something was wrong occurred in February of 1996, when I was 23 years old. One day the entire right side of my body went completely numb. It started in my right foot and within an hour it progressed up to my right ear.
What was the diagnosis experience like?
When the right side of my body went numb, I went immediately to the emergency room. At first, the doctors in the ER thought I might be having a slow-paced stroke. But after doing an MRI on my brain, they diagnosed me with MS. The ER doctors prescribed steroids to speed up the healing process and referred me to specialists—neurologists and neurosurgeons—to follow up with.
I went home that same day and waited two weeks for the symptoms to subside. Because MS was so mysterious to me, the whole experience was frightening and frustrating. The doctors couldn’t tell me how I got MS or what I could do to feel better. The only concrete answer I got was that there was no cure.
What was your initial and then longer-term reaction to the diagnosis?
My initial reaction to the diagnosis was complete fear. I was convinced that I would be permanently paralyzed in no time. As time went on and my symptoms (numbness, blindness, vertigo, and extreme fatigue) remitted, I realized that I had to have a healthier and more positive outlook. But six years later, I’m still fearful for my future. MS is so mysterious that I can’t take anything for granted.
How do you manage your disease?
There is currently no cure for MS, but there are medications to help manage it. I take a drug called Avonex, which I inject into my muscles on a weekly basis. I started taking it three months after my diagnosis in the ER. I also try to stay as healthy as possible by living a healthful lifestyle.
Did you have to make any lifestyle or dietary changes in response to your illness?
Yes, I have made some lifestyle changes, some of which have been very difficult. I’ve stopped smoking, limited the fat in my diet, and limited my alcohol intake. I do yoga twice a week and have learned not to “stress out” as much as I used to. I also see an herbal doctor twice a month. I think complementing traditional medicine with “alternative” medicine is important, since many conventional doctors don’t talk about things like diet and vitamins and how they factor into a healthful lifestyle.
Did you seek any type of emotional support?
Not in a formal sense. My friends and family have been wonderful and are all I need at this point.
Does your condition have any impact on your family?
It hasn’t had any major impact on my family other than their concern for my health.
What advice would you give to anyone living with this disease?
Ask questions and be proactive about your health care. Beyond that, just live, love, and be healthy! There’s nothing else you can do.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.